Peter Bell Featured on PBS’s ‘Need To Know’

In a single generation, autism has become one of the most common developmental disabilities, affecting an estimated 1.5 million Americans. With so many children diagnosed in the 1990s, over the next decade, hundreds of thousands of them will reach adulthood. How do we handle the upcoming needs of the adult autism community?

On September 7, Congress will begin considering the renewal of the Combating Autism Act of 2006. Signed into law by President George W. Bush, it authorized nearly $1 billion for combating autism spectrum disorders through public awareness and enhanced federal support for research and treatment.

And there’s a lot that we can do from a private sector standpoint as well. To talk about the steps autism advocates recommend, Alison Stewart spoke with Peter Bell, executive vice-president of Autism Speaks, and the father of a teenage son with autism.

As the farther of a soon to be 14 year old son,I often wonder how his life is going to be when he’s a young adult. We all know everyday is a battle in itself,but eventually our kids will be adults and you have to start preparing now for their future. However I don’t really hear a lot about what happens when they become adults. I’ve already come to terms that my son will live with me most likely the rest of his life,because of his autism he’s pretty much non verbal and has a very hard time communicating with others. Yes he has a strong support system with family and friends. But what about the children with limited support,finically and because of lack family support. There are homes for people with different disabilities but autism is such a diverse disability because no child or adult will be the same. I would love to see organizations start for the purpose of families living with adults with autism. I think these families need our support also and in the upcoming years so will our family and our son.

I have a 25 year old autistic son. He is consistently denied appropriate medical care because he is autistic. He has BC/BS but it doesn’t seem to matter. I’ve had to consistently tell providers that just because he is autistic, doesn’t mean he doesn’t get health problems just like everybody else. Currently, he has symptoms of Cushing’s Disease. His blood work backed it up and three years later the hospital still will not diagnose and treat him. I took him out of state and the endocrinologist had written some very damning comments in his file so that when I got to the other physician she just repeated verbatim what the original doctor had said in an email. After eight hours of driving, I did not get a second opinion. I’ve documented the discrimination and HHS-Atlanta region does nothing. I tried to appeal their ruling and provided proof to HHS-Washington that findings of fact were in error. I highlighted. I placed the evidence to refute the findings just behind the pages of the findings that were wrong. Rejected. I asked my congressman to intervene. Nothing. It’s like genocide all over again, but this time in America.

We have just battled to get my daughter into a Group Home. We are now fighting to get our city aware of the fact that there is no hospital for this group of people when they have a melt down. My daughter was Baker Acted and sent to a facility for bipolar, etc..She was hospitalized for over a week with pedophiles, prostitutes and people who “hear voices.” We were told she didn’t belong there but there was no place else to send her. With the numbers increasing in our city, we are beginning a campaign with legislators etc…to have a place that parents and social workers can send these cases for help. We will have more and more cases like my daughter’s since programs are being slashed and people with these disabilities have no other recourse.

When u say a group home, is it a place where ur precious daughter can live? if so, why would you leave your child out of your sight? if something bad happends to ur child in one of those homes u will never find out. i have a 10 year old austiticgirl and she will be with me till the day I die. Love ur little girl don’t abandon her when she needs you the most =)

Joanne

August 10, 2011 at 4:19 pm

Jessica, Your response to Iliana’s post was judgemental at best…not every group home is filled with abusive house workers….and not everyone is in the position to keep their kids at home. Just because you think this will work for you, doesn’t mean that Iliana’s life path will lead her the same way. Placing a child in a group home is NOT abandonment!

Ria

August 11, 2011 at 9:48 pm

I have an adult son with autism who lives in a group home. Last year he had a very bad reaction to a medicine and he stayed there for a few weeks. Doctors in that Hospital had told us that he does not belong here; His behaviors are mostly because of his Autism, but he had to stay there because he had no place to go to. That was heart breaking for us. He stayed there until he was clean and stabilized on other medicines. I wish they rent a place and hire a doctor for emergency situations like this. We are looking in to alternate arrangements but so far we have nothing we can depend on

Laura

August 29, 2011 at 1:55 pm

What will you do to keep your child socialized once she reaches 21 and is out of school? There are some day programs. some work placements, and those work for some, but I have doubts that will fit my child. I can see him in a group home so he will have peers. My teen is too social for home-schooling (tried it), and needs his friends.

I have a 22 year old son who has had some apparent learning and social issues since he was litle, but know one here can say what it is. I have lived for 22 years with some extreme behaviors, that I have not been able to put my finger on. While I was watching American Idol early this year, one of the contestants stated that he was a high functioning autistic, and it hit me. Since my son seems so normal in most ways, but really has trouble in most social areas, I.E, working at a job, and school when he was in attendance, and he alos has some intense interest, he can tell you most things fish, he takes care of fish tanks like no one i’ve seen. He gardens and he fishes. that’s basically it. Except when he is upset about something, then things really get intense. I also have been recently asked by someone who has an autistic brother, if he was autistic. How is it possible that something like this could possibly be missed, and is there a way to have an adult diagnosed? Help, dont know what to do. Thanks.

You can have an adult diagnosed. i work with young children with developmental delays and autism. I also have a niece that is almost 20 and just got the diagnosis. A psychologist with experience in autism should be able to help you and your son.

Lori,
My son was mis-diagnosed at age 5 with ADHD. I started questionning that diagnosis when my son was 9 and I realized that he was very different from other children with ADHD. I finally found a correct diagnosis from a clinical psychologist….you may want to check with that type of doctor….
Good luck in your search for answers! (It took me 2 years to finally get the correct diagnosis…I hope your journey towards finally knowing what is wrong with your son doesn’t take as long)…

Hello, Ive been reading your blogs, do any of the states in which you reside provide state funding to help support you in getting assistance either financially or through early intervention programs to help your children? Im currently doing research on what programs are most effective in the early years to assist in aiding those on the spectrum. Here in NJ with the highest concentration of autistic children and we have some work to do to benefit all.

Hi Stephanie, Not sure which person you were talking to, but I can tell you that I live in Georgia and there are programs that do help families in getting assistance. The problem is – they do no have the funds to help everyone that applies.
I basically had to fight the health insurance company (state health insurance) to prove to them that my son’s diabilities did not just affect him in a school environment but throughout his entire life. Apparently the health insurance companies will not pay for testing if it’s for educational purposes. I jumped through a lot of hoops, had a lot of doctors wish me good luck in getting my son properly diagnosed because of the health insurance companies would not pay for his testing.
Well, 2 years later and a long way down the road, I did get him tested and he was properly diagnosed.
The frustrating part is that in the county I live in – there are no Occupational Therapists, there are no Behavorial Pediatricians, there is almost NO support for families that have Autistic members. I currently drive 60+ miles one away to another county each week so my son can receive his therapy.
On a positive note, I can say that we have been blessed with teachers in the school system that do their job and do it well! They have definitely “risen to the occasion” and have been willing to do everything and anything that I suggest to them when it comes to helping my son learn in the best way possible!

The LCDC (Learning and Cognitive Development Center) in Boston used to be the absolute best. It was a husband and wife team that were tireless in helping autistics, even before autistics became “the new cash crop” as one of my sons’ doctors called him. The wife died and the husband was less active, but I believe they are still in operation. North Carolina claims the TEACCH program is the best in the world, but I have been underwhelmed – alot of talk, not much in the way of services.

I would like to publically say I am a late diagnosed Autism Spectrum (Asperger’s Syndrome) gifted individual. I find the word treatment and disorder a rather repulsive reaction to my gift. The people that I have been fortunate enough to meet while I endeavored to discover myself are far superior to the NTs (A new nick name that my people coined). You may say what his people? Yes, I think we are actually a developmental advantage, care to debate a topic with someone with an Asperger’s gift (You find one whose interest(s) is (are) similar to what you wish to learn; they will be able to fill in the cracks in your understanding). We have far more ability to understand things that NTs can’t even comprehend. I see no disorder that is apparent to those gifted. Ya’ know you find us different, but a person’s webpage I ran across last year summarizes it very well:

So the next time you say “treatment” think of giving us an ability to relate to your kind. Give us the break that we would not hesitate to lend an ear to hear your problems, to laugh and cry with you. Don’t treat as different or “handicapped” treat us as you would want to be treated. Ask what Thomas Jefferson, Albert Einstein, etc (Those people are actually considered to be mankind brain configuration version 2.0).

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I can say NC is the worst. The state legislature is currently slashing Home Supports. I had been providing those for my son for the last 5 years because there was so much Medicaid fraud in the provider agencies. Some of the provider agencies keep as much as 50% of the per diem and they don’t even provide the services they bill for. While HHS is not cutting staff or controlling their administrative costs, the benefits to the handicapped are being cut and cut quickly. I will probably lose my home. I’ve tried several agencies for emergency funding. The most they provide is about $500 and it’s not immediate and it’s a one time thing.

@Gadcock, may I ask where in NC you live? We would love to have you & your son join our Asperger’s Group in Charlotte if you are close. We are organizing AS groups outside of Charlotte. http://www.AspergersCharlotte.com. One of the group leaders, Kenji, has much contact info for help in the surrounding area. Have a great weekend, Jim